“Rest assured, you have the attention of the President and the White House”

“Rest assured, you have the attention of the President and the White House”My first meeting as a public member of the IACC

By Geri Dawson, Chief Science Officer

Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.

The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.” She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.” Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.”

These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.” He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.” “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.”

I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.

It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.

Dr.Dawson,
Congratulation on your induction into the IACC. Will your priorities and the avenues of study you recommended to the Department of Health and Human Services National Vaccine Advisory Committee (NVAC) about a year ago be at the top of your agenda with the IACC? Your excellent ideas have yet to be acted upon by our government, and the nation’s children (and future generations) rely on courageous voices such as yours.

You pointed out that “In the past several years, the prevalence of ASD has increased dramatically, underscoring the potential role of environmental factors in its etiology.”

You also pinpointed one of those potential environmental factors and wrote about it at length. “We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority.”

In addition to studies you might advocate for, what about studies that have already been conducted whose conclusions are being ignored? You said, ““Recent studies point to a key role of the immune system in the biology of ASD, raising questions about the effects of the significant immune challenges associated with vaccinations, particularly when delivered in combination and early in life….
Still other studies point toward subgroups of children with ASD with genetic vulnerabilities than can amplify the adverse effects of environmental exposures, including vaccinations, on brain development and function.”

Please advise us if you still stand by the content of your letter to HHS’ NVAC, and if it will guide your efforts on the IACC.

Thank you Dr. Dawson for everything you do on behalf of all of us and our families – especially all the wonderful things happening at the ATN.

Additionally, I am very happy that at the meeting, Dr. Collins expressed the importance of environmental factors in relation to genetics/the National Children’s Study.

I am of the camp that firmly believe that somehow our toxic environment is interacting with our genes (every step of the way).

My husband and I BOTH have a cousin who has a child with ASD (I actually have two cousins with children who are ASD – but one of my cousins is adopted, so no matter how much I adore her and her family – genetically, it doesn’t count). So that is three (or four, depending) ASD children in this generation (ages range from 7 to 24).

Both of our families are both huge, long-time, North American families on all sides. All sides have many very animated stories that go back in time very quickly (our families have always had the tendency of getting married late for generations – so the 1800’s isn’t that long ago – but the stories still in memory stop around the civil war). Trust me, within the stories that I know (scandalous, funny, outrageous, prideful, terrifying and tragic) – no one is institutionalized; there is not one single “odd” great aunt or uncle who was unable to support themselves; nor is there a “odd inventor” in the bunch (many scientists and surgeons yes – but all were or are very popular/influential – there is even a famous surgeon back there who was a very big deal/has books written about him; there is also a theorem named after someone, who was a very popular, gregarious chair of his department).

So, what on earth is going on?

Please steer as much of the funds to environmental research rather than strictly genetic/asd sub-type research. I am quite convinced that all of our childrens’ ASD genomes are running with spades through both of our families (speaking of spades – many were bridge-masters as well :) ). It would be a shame to delete anyone (not just our families) from the planet for the crime of having suspect genes.

But, who am I kidding? This is a losing battle – nothing on earth will stop industry/commercialization/pollution/corporations’ vested interest/individuals’ vested interest – not global warming, not species dieing, not even the poisoning of our children. It will be easier (and more profitable in the short term) to simply say Autism is 100% genetic and the rates are increasing because of better diagnosis. Note, I DO NOT believe Autism Speaks is saying that or thinks that. However, a very influential/genetically obsessed psychiatrist says that at every conference I go to – and this is the bile that every resident I meet spouts (we’re in the teaching practice at our local med-school, as both my husband and I think it is important to educate our future doctors – me, now more than ever). It’s fascinating seeing different reactions out of young residents when I tell them that ASD is, in many cases, an autoimmune disease – after they quite confidently tell me that it is simply a DSM-IV psychiatric disease – then off I go re: research coming out of UC Davis, Cleveland, John Hopkins, the ATN, etc., etc.). Okay – do something about our medical schools with your magic wand while you are at it (that I oh, so wish you had). I’m terrified for our society’s future.

Nevertheless, I am VERY thankful that you have a place on the IACC. Many, many congratulations and many, many thanks.

It is great that AS was able to reclaim the seat that Alison Singer misappropriated. However, given the fact AS is the largest autism org in the world, by far, we thought it only fair that AS get one science seat (Geri) and one parent advocate seat (AS VP Peter Bell).

It was very reasonable request given the fact that a number of organizations with w/ an IACC seat who represent only a few hundred people. It is extremely disappointing that Sebelius did appoint Peter. It was the right thing to do.

It was also hugely disappointing that Sebelius did not give a seat to one parent of the biomedical community. By biomedical I mean parents of severely affected kids who need medical interventions- which are few and far between currently. Instead Sebelius gave yet another seat to a psychiatrist, another extremely HF person w/ aspergers and SARCC a stand alone behavioral intervention only center.

All these new members are great people but NO ONE represents environmental science, Tom Insel’s supposed top priority. It was Moms of severe kids like me who wrote to Dr. Collins numerous times asking for a meeting. We wanted Collins to understand what severe and medically complex autism is.

Yet we are the only group int he meeting not to be appointed to IACC. I hope Dr. Dawson will do the right thing and support the membership of a Mom advocate of a severely affected child.

Katie,
There seems to be a typo epidemic on this thread. I made one too. You left out the word “not” but we know you meant you’re disappointed that Peter Bell was not appointed by Sebelius.
I have a question for you. Had Peter Bell been appointed, would you have considered him a parent in the biomedical community as well as a representative of Autism Speaks? He has disclosed that for years, he has taken his severely affected autistic child to several doctors who practice biomedical treatments for autism.

I had hoped that by choosing to post on the Autism Speaks blog, Dr. Dawson was creating an opportunity for some give and take with the autism community. I’m sure I’m not alone in wanting to know if her previous recommendations to the HHS NVAC have changed substantially, or remain the same.

concerned parent :Dr.Dawson,Congratulations on your induction into the IACC. Will your priorities and the avenues of study you recommended to the Department of Health and Human Services National Vaccine Advisory Committee (NVAC) about a year ago be at the top of your agenda with the IACC? Your excellent ideas have yet to be acted upon by our government, and the nation’s children (and future generations) rely on courageous voices such as yours.
You pointed out that “In the past several years, the prevalence of ASD has increased dramatically, underscoring the potential role of environmental factors in its etiology.”
You also pinpointed one of those potential environmental factors and wrote about it at length. “We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority.”
In addition to studies you might advocate for, what about studies that have already been conducted whose conclusions are being ignored? You said, ““Recent studies point to a key role of the immune system in the biology of ASD, raising questions about the effects of the significant immune challenges associated with vaccinations, particularly when delivered in combination and early in life….Still other studies point toward subgroups of children with ASD with genetic vulnerabilities than can amplify the adverse effects of environmental exposures, including vaccinations, on brain development and function.”
Please advise us if you still stand by the content of your letter to HHS’ NVAC, and if it will guide your efforts on the IACC.
Thank you.

In previous open letters to the HHS National Vaccine Advisory Committee, I have outlined several research priorities important to the autism community, including the need to better understand whether there are subgroups of children with ASD who have genetic and/or medical vulnerabilities that could potentially amplify the adverse effects of environmental exposures. The study of environmental factors as contributors to risk for autism and the role of gene-environment interactions in the etiology of ASD continue to be high priority areas for Autism Speaks’ research funding and will certainly help guide my efforts on the IACC.

Dear Dr. Dawson,
Thank you for responding. I’m heartened that you still stand behind the content of your previous open letters to the HHS National Vaccine Advisory Committee, which include the letter I cited.

The Churchill quote you referenced in your post is indeed inspirational.
But even more inspiring to me are those individuals who stand up to enormous political and economic pressures to fight for the health and well being the young, the vulnerable, the voiceless and powerless. A quote of yours comes to mind:

“We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority.”

Thank you for writing that and continuing to stand behind it. For the sake of our children, I hope the President and the White House are listening.